Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-10-2008, 02:05 PM #1
screwballpookie screwballpookie is offline
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Confused RSD Maybe? HELP?!

Hi everyone,
I know it has been a long time since I have been on the site and I am sorry. I have a few questions to ask and hope to get some opinions and/or help. I have been fight hoarseness when I talk for over 3 months. I have not been sick at all, but still hoarse. I seen my family doc and he did what he could to look down my throat. He told me just above the vocal cords and just below my throat it is swollen and red. He put me on prilosec otc thinking it could be acid reflex. I took that stuff for 2 months and nothing happened. he then told me that I would probably have to go see an ear,nose,throat doc. I told him i can't afford it because I don't have health insurance.I can't get health ins. because of my rsd.He does not know what else to do then. So I am just dealing with it. Is it possible that rsd might be causing this? Like I said I am in no way sick with a cold or anything like that and have not been since this happened.If not rsd then what could be causing it? Please give me some ideas.
I also just within the last month and a half have been having trouble with my feet,calves and knees. I have been having alot of trouble with pain. i can't put much weight on my feet or knees because of pain. I seen my pain doc and he sent me to an orthopedic specialist because he said that this is not in his specialty. I went to see my ortho and they took x-rays, he had me walk across the room ( I look funny when i walk and I am very slow) get on the table and he bent my knees and I cringed. he had me pull my feet towards myself which was difficult and he asked me if that was all I could do and I said yes. I also had to pick my legs up off the table with strait legs and couldn't go very far with either leg. He told me that my legs are very week and I also asked him about my right hand all the way to my shoulder neck area and told him that my pain doc said it could not be rsd that it is rare that it spreads. I told the ortho that I have done a lot of research since I have been diagnosed with this and I believed that it could be a mirror reaction and he told me if I am having the same symptoms in my right hand as I am in the left hand that I probably have it in the right hand. He also told me that the structure of my bones look fine that he thinks it is a neurological problem. He was going to get his dictation done asap and get it over to my pain doc and that I was to call them by the end of this week and make sure they get me set up with a neurotherapist doc asap. He doesn't think I should wait to long. I asked him that I had crutches that was set up for my left hand to put more weight on my left forearm and I tried them to see if they would make it easier for me to walk and he said no to using them because he doesn't want me depending on the crutches and making my legs and feet weaker than they are. My question is, is it possible for rsd to go from upper extremities to my knees and down? I have no problems with my thighs yet just my knees and below. So yes I am waiting to talk to my pain doc hopefully Friday, but is it possible to spread like the way it seems to be? Also What should I do about my hoarseness? I will take any opinions and help that I can. So please help me I am very scared.

Sincerely,
Tracy(Screwballpookie)
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Old 12-10-2008, 04:21 PM #2
Gymjunkie Gymjunkie is offline
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Tracy
All of the published medical opinion on CRPS is that it can spread in 3 different patters. The spread can be of the mirror sort you describe, it can be contiguous - in other words the pain spreads further along the limb where it was originally or it can appear in a completely independent area of your body. There is nothing at all to stop CRPS symptoms appearing in your leg even if it was originally in your arm/hand. If you need evidence of this opinion for any of your docs please go to www.rsds.org and read through all of their clinical guidelines, the Dutch clinical guidelines and the medical articles archive which is an excellent and reputable source of data.

As for your hoarseness, it is impossible to answer this. I know you don't have insurance but it is terribly important to have this investigated. It doesn't sound like anything listed in the published, clinical information available on CRPS symptoms. It could be anything so you need to get it checked out - it may turn out to be just an infection or something else that can be easily treated. Best of luck.
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Old 12-12-2008, 11:19 AM #3
Annie Poo Annie Poo is offline
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Default spread from upper to lower extremity

I have CRPS type II from a venipuncture injury to the radial nerve in my right arm. It spread up the arm to the entire right upper quadrant of my body, then later down my right leg. Thus, I now have symptoms in only the right half of my body, including the right half of my face/neck/head. I've never noticed symptoms in my throat, but have had symptoms in my mouth, particularly the right half of my tongue & lip (which is a pretty freaky feeling) during flare-ups.
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Old 12-12-2008, 12:55 PM #4
JOAN_M JOAN_M is offline
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If there is any way you can get insurance, you should do it now. Good description of the ways rsd spread have already been mentioned below and i agree totally.
The throat i am not sure of, but i have read of so many things rsd is responsible for, that i would not be surpirsed. Also, it surpresses the immune system and so it could be some sort of infection.
Good luck to you and let me know how you make out.
Joan
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Old 12-12-2008, 04:44 PM #5
screwballpookie screwballpookie is offline
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Crazy Thank you to all!

Thank you all for your replies and your support. Right now I am just sitting here going crazy with so much pain and all the support I get is better for me. I can't thank you all enough for your responses. I just called my pain doc today and found out that they had not gotten the report from the ortho's yet that I should call the ortho's office and see what they say. So I did that and the nurse I spoke with told me that the report is done and that they would get that faxed over right away and i also asked for a copy for myself and they were going to get it in the mail to me right away. I thought I would wait until Monday before i called my pain doc to make sure he had enough time to read over the report and think about if he will send me to a neurosurgeon. So I will hopefully get the ortho report tomorrow or Monday cuz it will only take one day to get here. I always look forward to new doc reports so I can see what they really think and diagnose. I might sound crazy for that but I would rather know now than have to wait for a long time before I find out what they think. The sooner I know the better I can learn to deal with it. So I will let you guys know what the report said when I get it and also will let you know what I find out from my pain doc. Thanks again for being there for me.

Sincerely,
Tracy
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